Hi my name is Jackie Kaye, the Medical Assistant at the Myasthenia Gravis Treatment Center. This is a story of Flo Burka, my Godmother and cousin and how her Myasthenia Gravis story started out of the blue. My relationship with Myasthenia Gravis started in 1972 when I came across a kit sent to our family to collect money for the charity. I was ten years old and I went from house to house in my neighborhood to collect for a disease that I knew nothing about, but would have a connection to later in life.
In September 2014 I was living at my eighty-four year old cousin’s house because of my own life happenings. I was working part-time and helping her with daily activities around the house. One day she began slurring her words. It’s not funny now, but we were both laughing. About a day later we realized she couldn’t swallow her own saliva. Then a day later, on top of that, she started bending at the waist as she was trying to walk. You have to understand, Flo only had a bit of high blood pressure then. All this in less than a week’s time. Wow – I thought I better take her to see her PCP.
It was Friday Sept 18, 2014 and she needed blood work, so I thought we could go to Ohio Valley General Hospital to do that and stop in to see her PCP since his office was just down the hall from the lab. Because Flo didn’t have an appointment, he agreed to see her in the waiting room. I explained what was happening and he said he would see her next Tuesday and check her out then. (??? What???) So, we went home. I kept thinking something serious is happening. The next day I called an ambulance to take her to the ER at Allegheny General Hospital. No one in the ER could figure out what was going on with Flo, so they decided to keep her there.
After being admitted and after answering all the questions from an onslaught of doctors, she was moved to the ICU where a pulmonologist prescribed Mestinon. My sister was there and said Flo’s symptoms seemed to magically disappear, except for the pesky Drop Foot. It was then that she was diagnosed with Myasthenia Gravis. How ironic, this was my connection to Myasthenia Gravis that I learned so many years ago when I was a kid. Flo also had three Plasmapheresis treatments which helped her considerably.
It was a long road through physical therapy for her Drop Foot. While at OVGH Acute Rehab, another Allegheny Health Network neurologist saw Flo and just by looking at her diagnosed her with Parkinson’s Disease. Wow, that was something, along with Drop Foot and MG, she now has Parkinson’s Disease.
Boy, did I learn a lot as her caregiver. Flo did not have any extreme medical issues prior to her MG crisis. We both learned about Pyridostigmine (Mestinon), Prednisone, Plasmapheresis, Dyskinesia, Trazadone, Drop Foot, Cyprofloxacin and C-Diff. We also learned how all the meds work together and sometimes against you. I’m speaking of Cipro, an antibiotic that was given to her for an infection, that totally wiped her out. She had a hard time walking, moving and speaking. She was given another antibiotic and resumed to her prior state. Yikes, anyone with MG, watch those antibiotics.
During the covid pandemic on July 30, 2020 Flo turned 90 years old. We had a zoom birthday party for her. It kept everyone away (too bad covid, not on my watch) and at the same time she was able to see her family and enjoy the experience.
I took care of Flo to the best of my ability for six years. She was in remission from Myasthenia Gravis for a few years but still dealing with Parkinson’s symptoms. But on January 18th 2021 she developed a Myasthenia Gravis exacerbation which brought her to the AHN ER. Because of the pandemic the hospitals were on lockdown and patients could not have visitors or family members or their spokespersons there to help. I was Flo’s spokesperson and advocate and I’m sure that it was scary for her being alone in the ER. But eventually we got through it with phone communications. After the ER, she was transferred to the ICU for a round of Plasmapheresis, 5 treatments, one every other day. She did well and the Myasthenia Gravis symptoms faded. But as fate should have it, she developed an infection and on February 6th, 2021 she passed away.
I must say that I would never have gotten through those six years, the hospital stays and her hospice care before her passing, without the help of the Myasthenia Gravis Treatment Center, Dr. Rana and Cindy Spring, RN. Cindy would answer all my calls and questions and give me the best suggestions to help me manage Flo’s care at home. I can’t say enough positive things about the clinic.
My background consists of graduating from CCAC with an AS in Structural Design. I worked for 15 years as a Land/Highway/Heavy Construction Surveyor. Then I switched gears and received my Bachelor’s degree in Graphic Design and worked at an advertising agency for 4 years. Then became a caregiver for Flo and now I’m working as the new Medical Assistant at the MG Clinic.
I hope my detailed oriented background in engineering, graphic design and Flo’s caregiving will not only help the patients, but I’ll be able to give back to the people who helped me take care of Flo. Please help and support the Myasthenia Gravis Association of Western PA. They help clinic patients with not only everyday caregiving answers and suggestions, but even how to get financial support information for high cost testing and treatments. Thank You.